What Matters Most--Thoughts from a Parent of Three Kids with Multiple Disabilities

by René Harrell

Editor’s Note: René Harrell is the mom of three kids and the president of the Colorado Parents of Blind Children, a division of the NFB of Colorado. She is also a dynamic presence on the blindkid listserv, which is where she posted the following remarks in response to a mom’s inquiry about raising a blind child with additional disabilities. Blindkid is hosted by the NFB and the National Organization of Parents of Blind Children, and it’s called blindkid because that’s what we talk about—our blind kids. To subscribe to the listserv, go to <www.nfbnet.org/mailman/lisinfo/blindkid_nfbnet.org>, or go to the NFB Web site at <www.nfb.org> and search for “discussion groups.”

My daughter, age six, is blind and also has multiple disabilities. She has low-functioning autism, developmental delay, hypotonia, and a speech/language articulation disorder that is separate from her autism-related communication delay.
My middle son is four and he is sighted. He was originally diagnosed with moderate autism but lots of intensive therapy has moved him to the high-functioning range and he shows signs of soon moving into the Asperger’s range of the spectrum. In addition to his ASD diagnosis, he has an endocrine disorder for which he needs growth hormone treatment, celiac disease, deformities in his adenoids that lead to sleep apnea, and his new doctor thinks that what we’ve always described as facial ticks are actually small seizures, so we’re now running down that path. As an infant he was born without tear ducts and those had to be constructed with surgery. He had some other minor physical things that needed correction, too. He was hypotonic and refluxing to the point of almost needing a G-tube for his FTT (gastric feeding tube for failure to thrive), and had extreme difficulty in taking in food by mouth. Most of those issues have been resolved with time.

My third child is also sighted but was born with what we thought was a minor heart defect that would resolve itself given time. She turned out to be one of the rare ones that developed complications. She now has permanent aortic valve damage as well as a separate electric-rhythm disorder. Both conditions will require surgery before the age of ten.

So, when it comes to siblings, I just take the approach that we all have stuff in our lives--we all have unique issues, unique strengths, unique struggles, and our purpose as a family is to encourage one another. Our family motto is “Family first--together we win.” We also often say, “Family gets our best, or no one gets the rest.”

Granted, my children are still very young; Clare is the oldest at six and my other two are four and twenty-one months. However, we consider it extremely important to instill that concept that we are a team, and we want to do things and frame our activities in a way that makes our team successful for every member in it. Each one’s strengths need an opportunity to shine, and everyone needs encouragement and help with the areas with which they struggle. This is the value we try to instill in each of our children. No one is better or worse, we are each individuals that need to be honored for who we are.

In terms of dealing with the multiple disabilities in my blind daughter, I quickly realized that I needed to be the synthesizer for the whole process. I have to constantly evaluate, prioritize, and re-assess her most pressing needs. For Clare, communication has taken over as our highest priority. Our biggest goal for Clare is that she has every opportunity to develop effective communication with the world around her. So, we have spent an enormous amount of time involved with our local Autism Society of America chapter.

While Clare is the only child in that group who is blind as well as autistic, I have gleaned a wealth of information on augmentative communication that we have been able to non-visually adapt for Clare’s lack of vision. The organization has also been a tremendous source of information about how to structure routines for her, how to prepare her for transitions, and how to teach her new concepts. This was also the group that gave me the tips we needed to foray (with pretty decent success) into toilet training this past Christmas.

We also have tapped into resources through our local developmental disabilities board and our local Association for Retarded Citizens (ARC). These are the groups that have been able to offer us services appropriate to Clare’s cognitive level, and who encourage us along the path of trying to dream and plan for Clare’s eventual transition into adulthood. Because Clare will never be able to live independently or without supervision, we have gained invaluable insight into the steps we will need to take to assume guardianship over Clare when she reaches the legal age of adulthood. We have learned how to structure a trust for her to protect what government benefits she might need, and how to financially plan for her future when someone else might need to care for her. These groups have provided us with information about the options available to her for adult living programs, supportive employment, recreation opportunities, social opportunities, and inclusive programs that will support and integrate her successfully with her peers.

In short, we have pursued those parent-experts who also have children with Clare’s other disabilities. It then becomes our job as her parents to sift through it all for the pieces that are meaningful to our specific situation: we modify, synthesize, adjust, and integrate all of this information in ways that specifically benefit Clare. We try and view everything not through the prism of one specific disability, but through the prism that is our daughter. And the attitude we take towards each of her disabilities is always “What can we do and how can we approach this so that we can mitigate its negative impact on her ability to lead a full and rich life?” That is the question that we ask when approaching each of our children’s disabilities, both our sighted children and our blind child.

As a parent, it makes for a very full plate, but a very rich and rewarding one. I remember joking to my youngest daughter when she was still a newborn, “Hey you, the therapy schedule is full, so I hope you’re not thinking you’re going to need any!” We were so confident for so long she was going to be our “issue free” child and, sure enough, that didn’t happen. We didn’t go into parenthood planning on having so many children with so many additional needs but--wow--have we learned so much. My children have made me into the parent I am today, and I am a stronger, more capable, more discerning, more thoughtful, more driven person because those are the skills that parenting them has required. I believe every single one of my children can make a positive contribution to our society, no matter what alphabet soup of labels they carry. My job as their parent is to help the rest of the world to look beyond the diagnoses and see what I see: remarkable kids who can be remarkable adults if given the right attention, instruction, encouragement, coaching, guidance, opportunity, and access. This is what I wake up every day figuring out how to accomplish, bit-by-bit and day-by-day.